Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: exhaustion (page 2 of 2)

My own worst enemy

 

Again I woke feeling okay but not awesome. Some of you may get tired of reading this because I know I am tired of feeling this. I drag my sorry butt out of bed, get a cup of Green tea and look longingly at the coffee machine. On these days when I feel so flat I crave the idea of caffeine like it you would not believe.

It’s a normal weekday for me, I take the kids to school, I do some household errands, I vacuum and then I decided to treat myself. Again I will be my own best friend and take myself to the movies. Today I am seeing the “Wolf of Wall Street.”  I’ve always wanted to see but had no one to see it with. Everyone else in my world was not that excited by this movie.

It was certainly an interesting experience, I was one of only four in the cinema, an old lady, a woman in a wheelchair, a suspicious man in a trench coat, yes I said trench coat and me. If you’ve seen this movie then you will understand why I felt uncomfortable. I saw more of the human anatomy (mostly female) and also of the dark side of human nature than I ever had before. The fact that this movie is based on a real person makes it even more interesting.

I come home and had a little rest and then get Sam from school. I squeezed in a Pilates session, make dinner and then take the kids to youth. This routine is a great but where do I fit in this one to 2 hours sleep that I am being told to do every single day. Something has to give and I don’t want it to be me. At the moment it is me and its me suffering too much pain and lethargy.

By 930pm I am completely exhausted, I mean I am in so much pain I just needs to sleep. I need to find a way to rest and prevent myself from getting to this level of pain. I also realise I am my own worst enemy.

I have preached work life balance my entire professional career. I am the first person to tell someone to put themselves first, to be their own champion, to take care of themselves because if they don’t no-one else will. How sad that I have not been listening to my own message. This alone is so confronting and makes me feel like a hypocrite.

Luckily I am one determined woman and will not give up on learning this lesson. How can I expect 40+ years of patterning and learning to be unlearned in a few weeks/months. This is part of where my own patience with myself is critical. Tomorrow I have my lymphatic massage I’m hoping it is helpful and that it feels relaxing.

Flatter than a Flat thing

exhausted 1I slept ok, better than expected without medication. I wake feeling tired but ok. Tiredness is a permanent state of being for me at this time, Lethargy s like a friend staying on my couch uninvited and I can’t get the to leave.

Marc is out doing some errand and I begin to do some chores. It is not long before I realise I need to return to bed and sleep. The pain in my hip is unbelievable. I eventually fall off to sleep and wake at 3pm, I feel so hot it is like I am on fire.

I have my own personal light bulb moment and realise we have a pool! Eureka!!!! I go for a swim and oh my gosh it is so nice…… I float around I my own cool bliss.

I am not sure what it is but because I am so flat I am craving carbs something ridiculous. All I eat is chips, chocolate and liquorice. The only thing that tastes semi normal is liquorice. It is the only thing that can cut through the permanent metallic taste in my mouth.

Because I have eaten such crap all day I feel really bad by late afternoon. A combination of bad food and guilt has me crippled. I need to just crawl like a bad dog into bed and hide away.

I want to leave today, start fresh tomorrow; I hope my body will allow me to. Part of this is me learning to allow myself to have a bad day, a slow day even a nothing day. I am so achievement oriented and this journey is sometimes full of me achieving nothing except having a day like today eating crap and then feeling sick.

What’s that saying, “some days are diamonds, some days are stones…..”

Running on empty

dog tiredI woke at 1am and was wide awake until 3am. It was a combination of being too hot (internally, hot flushes) and being in too much pain. I got up and walked around for a little while.

These wee hours of the morning can be such bliss and peace or the exact opposite so horribly quiet and lonely.  The time passes so bloody slowly and every bad feeling or emotion seems magnified.  I am always so glad when the sun rises fem these nights.

Today we had vision Sunday at church. This day is always so inspirational, it lies out the vision over our church for the next 12 months. The vision spoken over this year is a year of new beginnings. This could not be more true for me and my family.

So many things will be new this year, Sam is growing as a young man, Moni is doing the HSC. Me, well I am just trying to find my new normal. Marc is balancing so many things and being the rock for us all.  This year will hold many mysteries, many challenges, many opportunities and much growth.

Physically I am in less pain today but I am still dog tired. It is really hard to put into words the gravity of this tiredness. I still don’t really even understand it myself I just know I have no control over it.

Despite being so tired today was a big day. There was little rest, and many errands to be done. Anyone else reading this who has a family knows exactly what I mean. Today simple things like the ironing, the shopping, the washing, general organisational stuff all that needed to be done.

I know some of you reading this may be saying, “Why doesn’t someone else do it?” The simple answer to that is, “Who?” Yes, we have had so much support, it’s almost overwhelming. However, these people have lives to lead too. Additionally, one thing I’ve always struggled with is asking for help.

So this day may take its toll tomorrow only tomorrow will tell. I’m so desperately tired but I can’t sleep. At midnight I decide to take sleeping tablets I just need to sleep.

Gotta get my insomnia sorted out

I Kylie's Personal Journey Documentary_Stage 1.woke at 1:11 AM feeling like I’d had hours of sleep. AAARRRGHHHH!!!

I’m wide awake, I’m having intense hot flushes, I just don’t know what to do with myself. I think a good option is to spray myself and stand in front of the fan.

What a sorry sight I must be standing in the darkness of my bedroom. One boob, no hair, bald as a badger and sweating from head to toe. I know what a beautiful site you must be imagining right now.

Eventually the hot flush subsides and I contemplate going back to bed. However it’s not that simple, the intensity of these hot flashes mean that I am wide awake so sleep is not an option for a while to come. Thank goodness for recorded episodes of “The Block.” I promise you, this has saved my life. Combined with the fact that my husband can sleep while I have the TV on its such a blessing.

I eventually wake at 6:30 AM after falling asleep around 4 AM. I feel like I have a hangover, I really need to sort out this insomnia. How on earth is anyone meant to function with no sleep.

In general my pain is a little less today, I’m tired but I’m getting used to plodding along anyway. Again no rest today too many things to do. I need my blood test to track my body’s response to the last round of chemo as well as seeing if I’m ready for the next round.

I also have a visit from two good friends both are also work colleagues and keep me in the loop as to what’s been happening in the world of business. One of them is a lady in a complimentary business that we have worked with the years. The other has been my partner in business so many years. Both of these women are tremendous gifts to my life.

At the end of their visit my business partner mentions that if I am open to it she may consider buying me out of our business. This comes as both a shock as well as an opportunity. Because I don’t know what the future holds it may be worth considering how I can simplify things.

However, another part of me feels like one of my dreams has just been taken away. We always had a big vision for our business. To think this may change in a way that I never expected challenges me. Again I need to take some time and see what is going to be best for me and for the business. I also need to remember that her intention is to take pressure off of me and give me the space to get better.

I went for another swim tonight. These hot flushes are so exhausting, depleting, disgusting, frustrating. My hair that had just started to grow back has begun to fall out again. I think I’m going to go for the clean skin that look and just shave my head whenever I need it. I don’t want to look like a sucked out mango. Again another beautiful visual for you all.

I take myself out to the movies

IMG_1004I slept again – woo hoo! I could get used to this. I am feeling a bit yuck in the head, and still as tired as heck but I’m remembering what Human can feel like.

After I get the kids to school and do what needs to be done I decide to take myself to the movies today. Kylie no friends, how liberating! I really wanted to see August Osage County and hadn’t had the opportunity until now.

Have you ever gone to the movies alone? I encourage you to do it. The first time I was so uncomfortable thinking every one would be looking at me and judging me for being alone. But like most things in life, no one cares. It is actually incredibly freeing. Realising that you don’t need anyone else to entertain yourself or do things you want is very empowering.

I arrive at the cinema and I am alone in the theatre except for one other. I take about 3 seats to myself; unpack my healthy goodies I packed and sit back to be entertained. Entertained I am but it is an incredibly sad and heart breaking movie. What a powerful story. It really impacted me and made me feel so blessed for the family I have and the love I am surrounded with.

Yes we all have our baggage and crap that occurs. Every family has a few skeletons in the closet that’s for sure. If they say they haven’t they are just having themselves on.

When I arrived home I was greeted by an incredible bunch of flowers from my networking group 4N. What a beautiful thought and gesture. I feel so much gratitude for these people that are willing to reach out and let me know I am in their thoughts.

I haven’t rested today so I am totally whacked by nightfall. I do an experiment tonight and decide to try to sleep unaided by sleeping pills or pain relief – am I mad or not? Let’s see hey?

 

 

Round 2, day 3, I re-enter the valley

woman waitingI slept until 3am which is just gold. I woke because my hips were so sore I could not move but desperately needed to. I am feeling quite weak and shaky. I’m not sure if I’m nauseous or hungry.

Some advice? To anyone out there going through chemo or who knows someone who is, please encourage them to keep a journal. It has helped me so much to map out my response to chemo and how to be prepared. It may be all I have energy to write in it daily, but is also a much needed release valve.

I do feel better on this day 3 than last time but I also know what to expect and they have given me some more anti-nausea drugs in my toxic cocktail to hold me until day 4-5.

It’s both Sunday and Australia day today. I make it to church barely, but am so glad I went. I feel bad for the family as they all stay home because I am so whacked I can’t do any celebrating. I don’t want them to miss out too but they won’t hear of it.

We get home from church and I just fall into bed. I cant even talk I feel so bad. My tank is so empty I imagine dust sitting on the inside of it. I got up and dragged myself to the kitchen to eat and went back to bed, it just takes the edge off of my nausea.

I have awful back spasms so took some Endone to help with this. My hands, feet and torso feel so bloated and hot. If I could Id run away from myself! I’m also constipated which adds to my discomfort.

Marc is heading back to school tomorrow and he is really unsettled. He doesn’t want to leave me but I assure him, all I am doing is laying in bed. I honestly won’t be needing much, just a mattress and a fan to try and keep me cool.

Until now he has been mostly off work during the holidays so we have journeyed this at the hip. The timing of this has been such a blessing for me, if there is such a thing. Having Marc by my side every step of the way, encouraging me, believing in me, holding me up, wiping the tears when they roll down my face. I am such a lucky woman to have his support.

Yes he is about to go back to work but I will always have his support, so I am ok with it. I also know this is but a season, and things will start to improve once chemo is finished. They must.

Laughter is such great medicine

laugh or cryI felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.I felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.

We had such a great day laughing reminiscing and sharing. We have always had a relationship where we thrive on each other’s energy and ideas. She has the ideas, I follow through, it is a great balance.

Friends are just so important. I know before I was diagnosed with cancer and I was seeing a counsellor for some stress management support. She asked me what I did to have fun and I couldn’t answer her. My world had shrunk to work, managing family stuff and more work. I was struggling with a unhappy relationship with a loved one and I was really stressed.

My cup was empty and I just kept expecting myself to produce more. I am sure I was on empty for many years. This journey has been teaching me how important laughter, friendship and prioritising me is. All work and no fun made Kylie a very sick woman.

So if you are struggling with something, whether it is health or stress of some kind, take an honest look at your life, at what makes you feel good. Promise that you will do more. Fill your cup so you can be there and be fully present for others. Letting yourself become run down comes from a dysfunctional place of self importance, (everyone needs me.) In fact, what you are doing is the exact opposite. You are being really selfish because no one gets the best you.

What a Big Lesson for me!!

I came home and had a lovely dinner with my boys and we watched a silly movie. We laughed and laughed. I noticed my head and scalp feel really tingly and sore. I wonder if tomorrow will be ‘D’ Day or ‘B’ day. Only time will tell.

Sam has not been well since he came back from Summer camp. He has a fever and a headache. I asked him to come in through the night if he needs me.  I hope he isn’t coming down with something.  No matter how sick you are a Mum never switches off.  Makes me really miss my lovely Mum 🙁

 

Which way did that Truck go?

 

body outlineI woke feeling like a Truck had hit me. Damn that Truck. My head is aching and fuzzy, sinus all clogged up, body aching and I just couldn’t seem to get going. I had a ‘to do” list in my head but when I got up I realised I was not going to win this battle so I went back to bed.

That’s honestly one of the things I struggle with so much along this journey and that is the unpredictable nature of each day. No matter what you do, you have very little control over how your body will be. I used to be like the old reliable car, every day it would start without question. Yes, it was in need of a service or two but it kept on going.

Now I just can’t promise anyone anything. Now I feel like the car that is the lemon. No matter what you do something goes wrong. This is a very big adjustment for me to make.

So, I listened to my body and got up in a few hours to eat, then exhausted went back to bed again. This lingering headache just will not go away. I am beginning to wonder if the last two “good days” meant I over did it? I’m just not sure anymore….

Our kids get back from camp today – we are excited and have missed them. I am still waiting for my hair to fall out but it seems today is not the day, Yay! I did warn the kids that when they come back I might be bald. They were both cool with it. How blessed am I? I was half waiting for them to ask me not to pick them up, how embarrassing to have a baldy fritz picking you up from camp?

At least I reckon I would have been embarrassed as a teen. My Mum going through her treatment never had chemo so she didn’t lose her hair. I wouldn’t have meant to be mean, but the teen years are tough enough without a bald mother to contend with too.

We had a friend over for dinner and we all sat about the table talking about love, life and the universe. It was really a great night. I am reminded over and over how blessed I am to have such a great family and group of friends surrounding me.

Some days are just hard

photoSo I am now Day 10 post first chemo round. I slept ok thanks to many drugs now at my disposal. My ovulation pain has stopped which is great, one less pain.  But the heat coming from my body is unbelievable, not even in a hot flush sense but pure heat radiating from my hands , feet, torso, it’s amazing and really uncomfortable.

Marc will be sitting next to me and can feel me radiating.  My hands and feet are swollen and hard to use, so walking and little things like opening jars etc are hard to do.  I had to have a blood test today to ensure my white cell count does not go too low.

Highlight of my day a great friend from my school days comes to visit. It’s the first time I have seen her in probably 18 months. We have our oldest boys (13 now) just 2 weeks apart and they get on really well too.

We have a simple lunch, I am so excited to have her and her family here I am not focusing just how achy and yuck I feel. They leave after a few hours and I decide to lay down. Small bursts of excitement work for me at this stage.

I drag my sorry butt to my bed and as I lay down my beautiful puppy Betty Boo (yes that her in the picture) pees on the bed. I seriously want to cry. She doesn’t know any better, it’s my fault that I didn’t take her outside and my tank is in the negative now. Besides, look at that face how can you get cranky with someone so cute.

So after I change the sheets and put them in the washing machine I lay down. Oh man how good it feels to lay down and not move my aching bones. Then I need to go to the shops to get food for dinner. I am exhausted, aching, sore and having pain at my surgery site, (right mastectomy).

It’s weird I feel the nipple and all kinds of weird sensations sometimes like let down when you breast feed. Very strange indeed as there is nothing there.  My right chest is concave, unless you see it it is hard to imagine.  It’s not just like a flat chest like a Mans, its concave.  It is truly strange when you are used to the lovely womanly curve that used to be there.

As I swallow the Endone that will allow me to sleep I am thankful for old friends, for laughter, for clean sheets and for my family that I love and that love me.  Tomorrow is a brand new day.

Waiting and watching for the inevitable.

persist quoteI can’t believe it I slept like a log. When I finally woke I felt like I had a hangover.- believe me it was a slow start to the day. I am a little sore, probably after the Pilates. But hey, it a positive sore. YAY! I cannot tell you how nice it is to have a good sore for once.

For months now each time something is sore there has been some type of catastrophe or trauma associated with it, today it’s because I exercised – woohoo! I have developed mouth ulcers, hang on let’s say GI tract ulcers. I am pretty sure they go most of the way down. Each time I eat I can feel them burning and sore. They are all trough my nose also, any mucous membrane. I have been a little slack with the mouth wash.

One of the many tips they give you is to wash many times each day with a bicarb mouth wash to avoid or help with mouth ulcers. I keep forgetting and am also so dang tired that I lay in bed and think, “should do mouth wash, nahh couldn’t be stuffed.” So this would be me paying the price for that now.

I am now day 9 since chemo began and they say anywhere from Day 13-21 your hair will begin to fall out. I am psyching myself up for it. It is a weird thing to be waiting for. I’ve read some weird experiences. Some people wake up and their hair is on the pillow. One poor lady woke to find her eyebrows staring back at her from the pillow. Now that would be difficult to describe.

As a normal woman we spend most of our adult life trying to rid ourselves of excess or any hair in the so-called unacceptable places. Now I am waiting and watching to lose it all. I mean literally all. You lose, head hair, eyebrows eyelashes, leg hair pubic hair EVERYTHING! Talk about head spin.

That step makes it really real; I can no longer hide. Yes I don’t look or feel well now but no one knows unless I tell them. When your bald everyone knows it’s the BIG C.

As I am day 9 now I have 12 days until the next round. So I will begin to feel “almost normal” with the exception of the tiredness and some of the longer lasting symptoms before I go back and say “Sing it again Sam.”

I am having ovulation pain today that means my ovaries have not stopped functioning with the first dose of chemo, they will with the next round for sure. I look forward to the day when my energy is back, look out world.

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